Turning 22 with Fragile X Syndrome – What’s Next?

Turning 22 with Fragile X Syndrome – What’s Next?

Twenty-two is a terrifying birthday for the parent of a child with Fragile X Syndrome. It marks the end of formal schooling. We were daunted by this transition. Our son, Ryan, had been attending a residential school, New England Center for Children, for the previous 12 years. For almost all his waking hours, Ryan had one-on-one staffing and five additional staff nearby in case of behavioral outbursts. On community outings he was usually accompanied by at least three staff members. Now we were about to move him to Shared Living Collaborative (SLC) where he would have just one-to-one daytime staffing and two-to-one staffing in his residential placement, with no immediate, additional staff for help during a behavioral incident. We were tense and on edge about how this new arrangement would work. Rocky Beginnings This placement did not start out well. SLC seriously questioned whether Ryan could continue in the program. We approached a crisis point at SLC,

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